Topic: New To This Site--Lost My Husband, Neil, To CC

Hello to everyone, and I'm so sorry for all of the pain and frustration that you're going through.  I believe that my husband, Neil, had symptoms of liver disease years ago, specifically, auto-immune hepatitis, that eventually caused his intraheptic CC.  His family doctor completely missed every red flag, even glaringly obvious symptoms, and always told him that he was fine.  He began to get very sick with shortness of breath, and jaundice last June, and was admitted to the hospital where they diagnosed him with heart failure.  He went home, but was re-admitted when he turned very yellow (his family doctor, at first told him that it was "false jaundice", and not to worry about it!), and after he was in there for ten days, they found what they thought was a mass in his bile duct.  They transferred him to Cleveland Clinic, where we thought that he would be in good hands, but, unfortunately, while having a bile drain inserted into his duct, they severed his hepatic artery.  Neil lived for a week after that, but he was unable to speak due to having been intubated, and he was in a lot of pain.  They kept telling me that they couldn't give him pain meds because he needed to "respond" before they could remove the tube in his throat.  I asked them a million times what a biopsy that they had taken showed, and they kept saying that it was inconclusive, so myself and the rest of his family never knew that he had cancer until after he passed away.  Neil died on August 6th, 2011,  without ever knowing that he had cancer, and his heart that supposedly had "failed" beat strongly even while he was in terrible shock from having lost so much blood.  It was only after reading his autopsy report, that I found out that he had cholangiocarcinoma, and that it had invaded his lungs, gallbladder, and colon.  I feel so much anger at his family doctor for having missed symptoms that occurred years ago, and also at the Cleveland Clinic for having put him through so much unneccessary pain.  On the other hand, I am somewhat relieved that he never knew about the cancer that would have eventually led to his death.  I have so many mixed feelings right now, and just wanted to come to this site to find some answers to the many questions I have.  Thanks for listening...

Re: New To This Site--Lost My Husband, Neil, To CC

Dear 4Neil, I am just heartbroken after reading of Neil's plight. I am at a loss for words and everyone here knows that is impossible for me! Nothing you can do will change what was done and I am positive Neil would want you to be happy and go forward. With that said, have you thought "lawsuit"? I had a 'situation' with my husband and proceeded and won. It was bittersweet but I felt that no one should die, in a barbaric way. Someone had to answer for it. I can say that eventually the good memories will push the bad stuff back but it's going to take time. Bless you.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New To This Site--Lost My Husband, Neil, To CC

Hi,
Should I feel bad  I have cancer? NO.
Should I be shameful I have cancer? NO.
Is dying of other diseases better than dying of cancer because people are afraid or misunderstand cancer and will cause you feeling shameful  ? NO.
It is our responsibility,patient and caregivers to let others know cancer is a disease,like other diseases, need to be understood;need to be educated ;need to be hopeful when it present it's chance and need to be practical to accept the outcome after all the hard work you put in and still get nothing in return. It is not much different than other diseases.
Should I be happier if I die of other diseases than cancer? Yes, a full stroke while having fun. But not suffering unnecessary without knowing.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New To This Site--Lost My Husband, Neil, To CC

Dear 4neil,

My heart breaks for you. You must heal yourself first and let your anger go. Your husband would want you to be happy. Many of us or our loved ones have been misdiagnosed at first. My daughter was told by the first doctor she saw that she had a large chest and her pain was from bad posture. He wanted her to do physical therapy. Four months later, she felt worse and in her gut knew she had cancer. It was confirmed almost six months after the first symptoms. I always wonder if things would've been different had she been diagnosed earlier. What I learned from that experience is to question everything and I do. I don't care how much of a pain a doctor thinks I am. The thing that sticks out to me is that pain medicine was withheld from your husband. I don't think that is right at all. If you feel things were not handled correctly, maybe you should speak to a laywer. Otherwise, accept that you did everything in your power to help him and begin to heal from this horrible ordeal. Nobody should have to go through what you and your husband did.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New To This Site--Lost My Husband, Neil, To CC

Dear 4neil,

I am so sorry for your loss and felt so badly for you while reading your post.   I've been where you are and truely know how you are feeling.   Unfortunately this disease is so rare it is often misdiagnosised until it is too late.   I too found this site a few days after my husband passed away from this disease.
You have come to the right place for help, support and understanding.  It is all so unfair, but know you are in a safe place here and everyone has been touched by this disease in one way or another. You have every right to be angry and confused.   We are all here to help and support each other.  Come back often.  Try to take comfort in knowing that Neil is now in a better place, no longer suffering or in pain and he will always be with you in your heart and memories.  Nothing or no one can take that away from you. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New To This Site--Lost My Husband, Neil, To CC

4Neil,
Just want you to know that my prayers and thoughts are with you as you begin to put life back in order. I have this disease myself but I cannot imagine the feelings you had to go through in such a short period of time.

I spent considerable time yesterday just sitting in the shade in my backyard, feeling a little bit of a breeze, listening to the animals, birds chattering, horses chewing hay, chickens scratching in the dirt. It was truly peaceful and wonderful.

Take some time to sit and ponder the great times, feel the breeze and listen to the birds.

God bless you.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: New To This Site--Lost My Husband, Neil, To CC

Dear 4Neil,

I am sorry you had to find us, but welcome you to the support and strength this wonderful foundation has provided for me and my family.

We are here for you, anytime.

Thank you for introducing Neil to me,  I feel your emotions, having recently lost my mother at 66. There is "never" a good, or better or best age, they all stink when the time comes.

Neil lives on forever in your heart and your telling stories of him, that bring smiles and laughter to everyone's face. Please stay in touch, and know that I am here.

Hugs,
Roni
ronidinkes@yahoo.com

Re: New To This Site--Lost My Husband, Neil, To CC

Thank you all so much for the replies to my post--I appreciate every word.  Some of you suggested that I speak to a lawyer, but, I have already traveled that road with no success.  My probate lawyer, who was a friend of my husband's, insisted that I talk to a lawyer friend of his in Cleveland.  After reading Neil's medical records, and the reports of what happened at the Cleveland Clinic, he said that he could not pursue a case against them due to the fact that it would cost too much to sue, and that there was a slim chance of winning due to Neil's advanced cancer when he was injured.  In other words, if you arrive at the Cleveland Clinic with advanced cancer, they can injure you in any way they want to, because they know most lawyers will not spend the necessary money to sue them.  They used Neil as a "guinea pig" to perform numerous tests such as a colonoscopy (which caused him to bleed profusely), an endoscopy, kidney dialysis, a feeding tube--all without much pain medication.  My husband had huge, bearpaw hands that were tied down at the end of his life.  No one should have to die that way, but, the clinic treated him as if he were just a room number--not a beloved husband, father, and grandfather.  Neil was an avid Lake Erie fisherman, and I always worried about him when he was on the lake--I think it is ironic that he lost his life not on the water, but on the shore in the Cleveland Clinic.   Thanks for listening...

Re: New To This Site--Lost My Husband, Neil, To CC

4Neil, the lawyers need to try and see if what happened comes under "Hospital or Nursing Home neglect". They did not promote the passing but they did not give him comfort and care because of omission. It's time that Hospitals and etc learn they cannot treat human beings like that. Guess I really lucked out on my attorney. We needed the closure so badly and by the way over the 4 days of neglect 3 head nurses were fired! We did ask for all the records and found many discrepencies. Many.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New To This Site--Lost My Husband, Neil, To CC

4Neil--

My experiences were very similar with my momma.  She started to get sick back in 2001.  She always knew she had a gut feeling that something wasn't right.  After many doctors appointments and stilly rememedies to try and fix the pain she was feeling - nothing.  No one ever thought to do a ct scan except only of her brain...they thought she was crazy.  She was diagnosed stage 4 in August 2010 and died in August 2011.  She spent much of her time in the hospital also being treated as a room number, multple attempts at tube feedings, needles left in the bed, being too rough with external drains so they get ripped out, and just a waste of their time because she was dying anyway.  It is hard to describe the helpless and agry feelings when your loved one has to experience this and you just have to sit and watch.  The only comfort I find is knowing that she is pain free and dancing on the streets of gold in Heaven.  I pray that you will find peace and comfort through these times until you see Neil again.  The times when it gets hard...just know that you're not alone!  God Bless - Ashley

"I have fought the good fight, I have finished the race, I have kept the faith."         II Timothy 4:7
"I'll Be" Momma - 8.10.2011